Got an iron transfusion tomorrow (plus vent)

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NiceCupOfTea
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Date Joined Jan 2010
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   Posted 6/17/2010 9:28 AM (GMT -7)   
Completely out of the blue. Woman phoned up today and told me I was due to see the haematologist at 10am tomorrow. I was like "Oh". Don't tell me sooner, or anything. Luckily I can make it. I'll even be able to drive myself to the hospital, since my car got back from the garage today.

My haemoglobin was 7.5 when it was last tested, so I do hope this works. A different hospital tried an iron infusion about three years ago, and I went into anaphylactic shock. It was so fast - 30 seconds or so from noticing a tightening in the chest to losing consciousness. I was wary about trying an iron transfusion again, but my GI told me there are iron compounds which don't cause an anaphylactic reaction. Soon find out, I guess... :-/

Also, another thing I hope the iron solves is my increasingly annoying peripheral neuropathy / restless legs (I don't know which one it is) problem. It started some time last year but was mild and occasional. It's become much worse, and I hate it. It was ultra-bad a few days ago and really stressed me out. It's been better over the last couple of days. In case it is due to B12 deficiency, I am going to mention it to the haematologist and ask for my B12 to be tested.

And finally, this next bit isn't related to the iron transfusion, but I didn't want to make another thread. Mood swings are getting me down. Yesterday and half of today I was happy and motivated. Then about half an hour ago I nearly cried and plunged into depression. Calmer now, but it's just dispiriting at best, extremely debilitating at worst. I am on Entocort, but Prednisone never did this to me. I refuse antidepressants. (Long story, but long story short they either make me drastically ill or suicidal.) So I have nothing but my own mental resources to cope and they are unreliable and scanty, to say the very least.

sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 6/17/2010 9:34 AM (GMT -7)   
Hi NiceCupofTea... I've heard the same thing that the iron is bound differently so people don't have the reactions that used to be more common.

I'm actually getting my 4th of 5 infusions today. The infusion lab tells me that the Venofer is so safe that sometimes they run the drip in as little as 15 minutes. Not for me though! My veins are very sensitive and it stings sometimes going in. If they drip more slowly, it feels fine. Last week I blew 2 (small) veins, so this week we're using a bigger vein and a 2 hour drip.

I feel like I've started to notice the difference. My legs hurt whenever I get low on iron. They are better, but I still feel them from time to time when I'm tired. So, it's been 3 weeks since I started the iron infusions.

I'm so sorry about the mood swings. It's so frustrating everything we go through and having to try to keep our moods up. I couldn't tolerate the SSRI meds, but I'm ok on Remeron, which is not an SSRI.

Hang in there! Let us know that you do ok with your iron infusion tomorrow! I'll be sending good thoughts!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


NiceCupOfTea
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Date Joined Jan 2010
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   Posted 6/17/2010 3:18 PM (GMT -7)   
Thank you, sr5599.

I don't think I can carry on like this. I have failed. I am tired of this. There is no point, no purpose, no meaning to my life.

At some point, if Remicade/6MP does not work, I shall simply come off the drugs and withdraw from the medical system entirely. Don't care where I end up; not like I got anybody who depends on me.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/17/2010 3:35 PM (GMT -7)   
YOU HAVE NOT FAILED.

NiceCupOfTea, you haven't been on the forums for very long, but I like you, and I felt long ago that you were quite a special person, and a wise one too.

Never underestimate how special or valued you are, and never forget that. I know it's hard when you're feeling rotten, but you are liked and wanted and needed, so please don't give up yet.

How about we draw up a plan of action together? I'd suggest that step one should be getting your infusion tomorrow, and then giving yourself a week to recover from that. You may well find that the world seems a little kinder once your haemoglobin rises.

I'd also suggest dropping your doctor a note and letting him / her know about the mood swings. It doesn't necessarily mean that s/he will have to do anything about it, but I think it is safer for everyone if your medical team are aware of how you're feeling.

Please keep hanging in there. Feel free to drop me an email if you want hugs or just someone to talk to.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
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Date Joined Jan 2010
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   Posted 6/17/2010 3:58 PM (GMT -7)   
Thank you...

I've nearly finished a post that I was going to post on the depression board. I was going to end it with a request to close this account. If I post it there it will be clearer where I'm coming from :-/ I'm not always that down, but a lot of the time I am, and it's getting harder to cope with, tbh =/

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/17/2010 4:00 PM (GMT -7)   
Please, please, please, don't leave HealingWell.

I can't speak for everyone, but I know I'd miss you... a lot.

We understand depression, and care about you.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8561
   Posted 6/17/2010 4:04 PM (GMT -7)   
Thank you. Again...

I really was at the end of my tether when I wrote that. Your posts have helped a lot. I'll send you the post I nearly posted on the depression board, but don't feel obligated to write anything lengthy in return. My problems mainly come under the heading of "insoluble", so there isn't an awful lot that anybody can say about them anyway :-/

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/17/2010 4:13 PM (GMT -7)   
I'm going to have to go offline now because I'm waiting on phone calls, but will look out for your email, and do my best to reply in a few hours, ok?

PLEASE keep hanging in there. We care about you. Maybe just take the next few days as they come: at least tomorrow is taken care of, with the infusion.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 6/17/2010 4:24 PM (GMT -7)   
No worries. And don't rush about replying; in a few hours' time I will be in bed, hopefully asleep. And as the infusion is in the morning, I almost certainly won't get on my PC until the afternoon. It's 12:22am right now, incidentally. It must be early afternoon where you are. *knows that Australia is appoximately 12 hours ahead of the UK*

Take care. I'll post the email, then get a cup of (herbal, too late for normal) tea and take a needed rest from the internet, I think... <_<

Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 6/17/2010 4:36 PM (GMT -7)   
Yes, please, what Ivy said and more...though I don't post as often (today I seem to want to talk a LOT)...you all have become part of an extended family that I care about and hope nothing but the best...you have made me laugh and smile with some of your posts...please get some sleep...and I am hoping that the iron works for you...(((((((((((((((((((((((((((((((((((((hugs:NiceCupOfTea))))))))))))))))))))))))))))))))))))))))))))))))))))))))

Take care...
"The earth laughs in flowers"


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 6/17/2010 6:24 PM (GMT -7)   
your mental and physical health are interconnected and will effect each other. I know doing therapy has helped me alot, because in part I got in such a bad place because of being ill! It took a blood trans to really help me but the iron sometimes helps.
With p-n I strongly suspect that it is the b-12 def that is also not helping with your anemia...can you get that tested first?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 6/17/2010 7:36 PM (GMT -7)   
I was not in a good mental state when my hgb was 8.0 so I can relate. How about asking your GI about a blood transfusion as well? This will get you feeling much better within a day or two.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!


vixen
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Date Joined Jan 2010
Total Posts : 794
   Posted 6/18/2010 2:37 AM (GMT -7)   
 
Only just seen your post, please don't go :)
I am sorry that things are getting on top of you right now but at least by expressing how you are feeling is a huge start.
A deficiency in Vit B6 can cause depression.
I have been taking a vitamin B Complex tablet(contains all B vits) everyday for years and it has honestly helped me out no end. Someone actually said to me last year well surely now you can stop taking them, I thought good point and stopped for about 2 1/2 weeks but it was no good. symptoms reappeared and I am now back on them everyday(incidently it is the only supplement I take(bearing in mind no meds either as it son who has crohns))
I am not saying it will work but it may help (from first time taking it took about 3 months for benefits to be seen)
 
I hope you feeling more on top of things soon
(((((hugs)))))

Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 6/18/2010 4:53 AM (GMT -7)   
Well dear , you ain't no failure . Sometimes success is measured by putting one foot in front of the other when times are tough . Your doing that and more and I am proud your here with us. When I was being dx. I told my doctor I feared being labeled a nut case. That all my trouble was in my head. He told me that the mind and body are not separate . If anyone labeled me that way they had no business being a doctor. MMMNavy is right on the money. I have had therapy and it has helped . If your heart is weary you see a heart doctor . When your mind is weary you see another type of doctor . It all goes toward getting better . Also when our bodies are ill the chemicals that make our minds work well are sometimes in short supply and we get depressed. Some meds are just the chemicals we need to function on an even keel. Hang in there and know we care and are here for you . Now, go get your iron infusion and come tell us how it went.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/18/2010 5:52 AM (GMT -7)   
Aww sweetie I am so sorry this darn disease is getting you so down. I can relate to how you are feeling. I have had this dd for almost 35 years, and about 2-3 years ago I developed anxiety related to my Crohns. I think at this point part of your problem is definetly the low iron, and I think possibly the iron infusions or a blood transfusion will really help, and help with your spirits. I also agree with Vixen as I have found that complete B vits have really helped my spirits. I was getting my B12 shots one week, and then the next the complete B shot. Well I got lazy with the complete B shots and all of sudden I found myself feeling really depressed. Got back on to a regular schedule with the complete B and have found that it has REALLY helped my spirits. See about getting your B12 check for the P/N, and pick up some Vit B6 and see if that helps. Also, for my anxiety I use the lowest dose of Xanax, and it works really well for me. Whats really nice is that it doesn't mess with my guts at all. Maybe that is something you can talk to your doc about.

And girlfriend, don't you even think of leaving us. You are a valued member here, and I too love reading your posts. GIANT HUGS TO YOU!!!

Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 6/18/2010 7:05 AM (GMT -7)   
Just a quick post to say that the iron transfusion was a success!

Don't think you're getting away with a post this short from me, however :p I have to leave now to give my mum a lift, but I actually have a much longer (unfinished) reply waiting in the wings... <_<

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 6/18/2010 11:25 AM (GMT -7)   
I am so happy to hear that!
I hope that you were able to get some rest too...
I care about you...so take care!
"The earth laughs in flowers"


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/18/2010 3:22 PM (GMT -7)   

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 6/18/2010 6:09 PM (GMT -7)   
Thank you everybody! I already felt better anyway, but I feel even better after having read your posts :p

First things first, the iron transfusion was a success! That alone is actually quite a weight off my mind. I spoke to the haematologist beforehand. She seemed very nice. She explained that before the clinic had moved onto something called Ferinject, they had tried to avoid iron transfusions except as a last resort due to bad reactions and other complications. She was really praising the stuff, saying that nobody had had a bad reaction to it. Well, I managed to have a bad reaction <_<. I actually felt quite dreadful for the first hour. In the beginning I itched quite badly and where I had been itching, bumps came up - hives, I think. Not very many, about 4-5. I also had back pain at one point and, more worryingly, chest pains. But I never felt suffocated or that I couldn't breathe, which I did when I had an anaphylactic reaction last time. And the regular check ups showed everything as being normal.

Just as well the haematologist decided to be careful, though, otherwise it might have been worse :-/ She gave me half the normal dose (so I have to go in for a second dose in two weeks' time) and the infusion was started off at a very slow rate and gradually speeded up. At any rate, if you are like me and can't tolerate iron, then I recommend Ferinject. I have had so many bad reactions to iron over the years, that if I can tolerate this stuff I should think almost anybody could. I don't know its generic name, but *checks leaflet* it's a Ferric carboxymaltose compound if that helps.

I already feel physically better; although when I got home I did manage to lie on my bed and burst into tears <_<. But it was a short-lived depression! It was a delayed reaction to quite a difficult morning, I think. (Had a bit of trouble with my mum and dad, too =/)

@MMMNavy (and others) who mentioned B12. I can't believe I forgot to mention that to the haematologist. I felt so stupid afterwards when I remembered, but it was too late =/ I'll have to mention it to my GP now and ask him to do a test instead. Or I could ask for a test next time I go to the hospital; they didn't take my blood today but they said they would next time I went. Just have to find a way of engraving it into my brain so I don't forget >_<

@Rider - My haematologist did ask if I'd ever had a blood transfusion and I said no. I have a feeling the NHS wouldn't give a blood transfusion for anaemia unless you were at a dangerously low level. But it's probably the fastest way of curing anaemia that there is. My haematologist did say that, even with the iron transfusions, if I had an active inflammatory process going on my Hgb probably would rise only to 10 or 11, instead of the preferred 13 :-/


---

Sorry for my late reply. The above is the unfinished post that I referred to. Meant to reply sooner, but I had the severest breakdown after getting back home. I'm still shaken by it and don't feel out of the woods yet. I don't even know what triggered it, really. But ironically enough (ironically, iron... get it? <_<), I think the iron gave me the energy that I had previously lacked to get so energetically upset with. (I'm certain it's already made a difference; my legs feel calm and tingling-free. Didn't realise how much I was jiggling them about before.) Going back to what MMMNavy said about mental and physical health, I developed a theory today that, just as I neglected my physical health and it came back to bite me, so I neglected my mental health and that, too, has come back to bite me :-/ I would like to try therapy, but it doesn't really exist on the NHS and I can't afford to go private =/ I did get to see a psychologist for a single session last year. He seemed to be a good guy, but one session? Really, I wonder the NHS bother with mental health at all sometimes. They can't even begin to afford to pay for the intensive help that mentally ill people need, but that's another issue. *climbs down off soapbox...*

I'll try to wrap up this post, because it's getting longer and longer...

I made an appointment with my GP for next Monday, so I'll ask about B12 then. And mention today to him as well.

@sniper - Thank you :p By the way, I did read your diabetes thread. I'm sorry you have to deal with that on top of Crohn's, but I hope the insulin will make a big difference to your blood sugar levels. I had an uncle who lived a good life until nearly 80 despite having type 1 diabetes for 55 years of it. He'd have probably died about 50 years earlier if he hadn't had injectable insulin.

@Nanners and vixen - It's hard to see how I could get this low on iron without also getting on low on B vitamins as well, so I'll look into taking a general Vitamin B supplement. I'm not too optimistic about getting B12 injections, so I might have to take that in pill form too.

In the meantime, I do have a few valium pills that my GP prescribed to me a few weeks ago. I have resisted taking any until now, but I think I'm going to take one after posting this and try to go to bed in a relaxed frame of mind. Thank you again, everybody, and apologies for inflicting an even longer than usual post upon you all! <_<

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 6/19/2010 2:59 AM (GMT -7)   
Never apologise for length of posts :)
I was quite relieved to see that Nanners also rec B vitamins(thought everyone would think I was a bit loopy) I used to get pmt (also during and post) headaches(literally for 3 1/2 weeks out of every month), mood swings and then psoriasis joined in too(not a huge amount by some standards-legs and arms) I started on a B Complex and within a few months the headaches, mood swings and psoriasis went. I was obviously lacking somewhere ;) If you do decide to try, if poss stay away from supermarket brands(don't seem to have same affect) I take Seven Seas and only costs approx £2/£3 month. I don't know how well it can be absorbed in someone with crohns but as typically people appear to be deficient in one B or another it may be worth a try.

Hope you got into a relaxed frame of mind and that you get up refreshed and ready to face the new day

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/19/2010 5:23 AM (GMT -7)   
I am so sorry this is getting you down. Please continue to come talk to us. we all understand and want to help. I have this as a mild disease and there are still days I get down and depressed and just cry for no apparent reason. I think it is the nature of any chronic illness. But this place is such a source of support because we get that you cannot be upbeat and happy all the time.  I am sending you good thoughts and prayers and I hope this works for you!!!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/19/2010 7:22 AM (GMT -7)   
Hey NiceCupofTea, I hope you were able to have a restful sleep. Sleep has always helped to refresh my spirits. If they will not give you B12 shots, then look for some sublingual B12. These you put under your tongue and they absorb into your body that way. Per my GI they are supposed to be as good as the shots. Hope that helps some.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8561
   Posted 6/19/2010 9:43 AM (GMT -7)   
I do actually feel a lot better today. I had quite a decent sleep and was low upon waking, but it got better as the afternoon wore on. Talking of "little things", as per Sniper's thread, just a simple walk to the local shop turned into something unexpectedly nice. Passed a studio which is usually closed, but this time it had a sign saying "open", so me and my mum had a closer look. Turned out it was a gallery with photos and jewellry for sale, and although I'm normally more of a fan of paintings some of the photos were beautiful. I might buy one.

Again, thank you everyone. I can't tell you what a state I was in and this has really, really helped. I know I'll be depressed again, but as long as I have hope, that's the main thing!

@Nanners - Thanks. I will look into sublingual B12, if I have to.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/19/2010 9:00 PM (GMT -7)   
Great news!
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

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